TEEN TOLD SHE HAD CANCER ACTUALLY DEVELOPING SECOND SKELETON

PEOPLE

 

Teen, 16, Was Told She Had Cancer. Instead, Her Body Was Building a ‘Second Skeleton,’ Trapping Her in Bone (Exclusive)

By Toria Sheffield and Nicholas Rice  Published on October 4, 2026 04:00PM EDT

 

Holly LaPrade was 16 years old when doctors told her she might have cancer.

 

LaPrade, now 45, was living what she describes as a typical teenage life. She had recently gotten her driver’s license, started her first part-time job, joined her high school basketball team and had a boyfriend.

 

But not long after joining the basketball team, LaPrade began noticing concerning changes in her body.

 

“I began to experience stiffness and loss of mobility in both of my shoulders, as well as my neck and back,” she tells PEOPLE exclusively.

 

“My friend noticed that my neck was very stiff, and I was unable to fully turn it from side to side. I also began to notice that I could no longer lift my arms up over my head,” she added.

 

She also developed seven areas on her body that appeared to be tumors.

 

Her mother took her to the hospital, where LaPrade says she was initially misdiagnosed with non-Hodgkin lymphoma.

 

“I underwent a series of tests, met with an oncologist and was prepared to begin chemotherapy,” she recalls.

 

A biopsy eventually revealed  that she did not have cancer, but doctors still did not know what was causing her symptoms.

 

After spending a week in the hospital, LaPrade finally received an answer: fibrodysplasia ossificans progressiva, or FOP, an extremely rare genetic condition that causes bone to develop in muscles, tendons, ligaments and other soft tissues, forming what experts often refer to as a ‘second skeleton’ that “traps” the body in bone, according to Penn Medicine.

 

The condition is progressive and limits the body’s movement over time.

 

“I had never heard of FOP before my diagnosis,” LaPrade says, adding that — at the time — she simply wanted to get back to her normal life.

 

“On the night my mom took me to the emergency room, I had a babysitting job and initially resisted her request to bring me to the hospital. I just wanted to live my life, and I didn’t want a diagnosis to get in the way of that,” she recalls.

 

However, she adds she was “grateful” to learn that she did not have a potentially terminal form of cancer.

 

“I didn’t know anything about FOP, but I focused on the fact that it was not a death sentence,” she adds.

 

LaPrade says her road to diagnosis was particularly complicated because several of the procedures she underwent — including a biopsy, spinal tap and the placement of a catheter in preparation for chemotherapy — can themselves be extremely painful and traumatic for someone with FOP.

 

“The main reason that our community works so hard to raise awareness of FOP is because these types of trauma need to be avoided at all costs in FOP patients,” she explains.

 

“FOP can be correctly diagnosed simply by looking at the patient’s toes, as the majority of patients have a malformed or missing big toe,” she adds.

 

When LaPrade was diagnosed nearly three decades ago, there were no approved treatment options available to her.

 

“There were no treatment options at the time I was diagnosed with FOP,” she says. “I am a very optimistic person, but I never allowed myself to get my hopes up that there would be a treatment or cure within my lifetime.”

 

That landscape has now changed.

 

Following the FDA’s approval of Mirum Pharmaceuticals and Incyte’s Atebrioz (zilurgisertib) for adults and children with FOP, patients now have multiple treatment options for the rare disorder.

 

For LaPrade, seeing new therapies emerge after years with virtually no options is difficult to overstate.

 

“It is incredible that there are now three treatment options on the table to choose from,” she says.

 

“The progress that I have witnessed over the past 30 years has been incredibly inspiring,” she continues. “There is so much hope that exists in our community.”

 

“There is real reason to believe that our next generation of FOP patients will be able to live a life that is very different from the generation that came before them,” LaPrade adds. “I feel very fortunate that so much attention is being paid to my very rare condition.”

 

Still, living with FOP has presented challenges that extend far beyond the physical effects of the disease.

 

“The biggest challenge of living with an FOP diagnosis is the fact that it is so rare, and that can be isolating,” LaPrade, who works as a human resources manager, says. “It can be difficult for others to understand the challenges that FOP patients face on a daily basis.”

 

“FOP affects us physically, but it also impacts us mentally and emotionally,” she continues. “On my hardest days, those challenges can combine into a struggle that is hard to put into words.”

 

At the same time, LaPrade — who is married and has a 17-year-old stepson — says the diagnosis has brought unexpected positives into her life, including deeper family relationships and connections with others in the FOP community.

 

“It’s brought my family closer together, and it has put me into contact with an incredible global community of like-minded people,” she says. “I’ve developed close, lifelong friendships with many of these individuals.”

 

“I am very grateful to be surrounded by a loving family. That includes my husband, my parents, my siblings, my nieces and nephews, my stepson and godson, my extended family, and last but not least —my dog, Bailey!” she adds.

 

She also credits the physicians and researchers who have devoted their careers to studying the condition.

 

Today, LaPrade says her health has become more complicated as FOP has progressed with age, but she considers herself fortunate to have a milder case.

 

She continues to work, drive, travel, attend concerts and take professional development courses — activities she says are central to maintaining her independence.

 

“These are all things that are very important to me as I strive to maintain my independence and live a full life,” she says.

 

Her advice to others facing a life-changing diagnosis is simple.

 

“My best advice is to simply take one day at a time, when faced with any challenge in life,” she says.

 

“Living with FOP has certainly been challenging at times, but I am grateful for all of the positive aspects of my life that make it worth living,” she adds.